A brief update on Chrissy.

Lots of progress since I last posted.

Seizures and behaviours are now more stable than they've been in years. We finally got there! Chrissy has been able to go out and about, and is really enjoying life.

She now has the continuing healthcare funding that we fought for over such a long period. This should mean that she will get a better quality of care in the community.

She has a bungalow in Winchester through social housing and last week we selected a care provider, so it's all systems go. We hope to complete the transition by Christmas.

I'll post again when Chrissy has moved in.

Genetics Advances and Learning Disability: A Parent's Perspective

My book Bringing Up a Challenging Child.....http://www.jkp.com/catalogue/book/9781853028748 was published in 2000 and takes the reader through Chrissy's life up to the age of 14.

A decade later my chapter 'A Parent's Perspective' was published in the New England Journal of Medicine. Dr Samantha Knight, who was on the research team that discovered Chrissy's chromosome disorder, was editing the journal and, as you can imagine, it was a huge honour to be invited to contribute. The book, which was published in Feb 2010, had the fabulously un-pc title 'Genetics of Mental Retardation' (a term that is still used in the US) http://www.amazon.co.uk/Genetics-Mental-Retardation-Encompassing-Intellectual/dp/3805592809 My chapter encompasses Chrissy's life up to the age of 26, and lies behind reviews on the remarkable advances in modern technologies that have resulted in newly identified syndromes and the importance of genetics in learning disability. The best way I could think of to add my chapter was in a series of images that can be opened up and read individually. The 14 pages can be clicked on and scrolled through at the bottom of the screen.





In between the two books I also wrote a piece for the Daily Mail about the groundbreaking genetic breakthrough that ended our 22 year search for answers in 2006.




I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN (syndromes without a name) blogger

Ups and Downs

The roller-coaster ride continues! I'm feeling more optimistic again as there's been progress on all fronts.

Chrissy made it home yesterday! It's been a real struggle to get her up, bathed, dressed and out so all credit to the ward staff for getting her here.

Last week I had a 'mum meltdown' when I saw the wretched state Chrissy was in, & the only solution I could think of was to keep her at home until suitable housing was found. Now we've had another discharge planning meeting and seen the neurologist, I'm able to take a step back and make a more considered judgement. The neurologist has attributed the changes in Chrissy to Zonisamide, so it's being withdrawn but we're likely to see clusters of seizures. I'm not sure how well I could manage these at home and if I, alone, had decided to bring her home, it could all blow up in my face if I put her at risk. At least in the assessment & treatment unit there are always medical staff somewhere on the site.

The urge to kidnap Chrissy & protect her from harm at all costs grips me every so often. It's an irrational, but all-consuming impulse that made me sympathise with Sally Roberts, who ran away with her son to stop him receiving life-saving radiotherapy because she feared it could do him more harm than good. http://www.telegraph.co.uk/health/healthnews/9733803/Sally-Roberts-runaway-mother-will-allow-radiotherapy-if-sons-cancer-is-back.html Also, if Chrissy came home her place on the ward would still have to be paid for by the NHS so we need to do this properly and plan each step with her multi-disciplinary team.

So now I've had the opportunity to air my concerns to the neurologist and other professionals involved in supporting Chrissy I can see light at the end of the tunnel again. Zonisamide is slowly being withdrawn. Chrissy's had two seizures, but one of those was on 1 August when she was on the full dose of Zonisamide. She had the other seizure here in the early hours of this morning. Both seizures were one-offs & lasted around 30 seconds. I am concerned about what next with her epilepsy meds. In the past her seizures haven't been managed by Epilim alone but the neurologist said there is scope to increase it. Overall, on balance, would it do her more harm to increase her regular epilepsy meds - or add secondary antiepileptics - or allow her to have runs of seizures & use rescue meds? These runs of seizures used to only occur around twice a month but they've been suppressed by meds so I'm not sure what her natural pattern is anymore. I don't know anything about the long-term side-effects of using rescue meds at the frequency Chrissy would need. The assessment & treatment unit still use PRN Diazepam, but care providers I've spoken to use buccal midazolam, which is given into the buccal cavity (the side of the mouth between the gum & cheek). I wonder why the latter has never been tried for Chrissy & which would work best? These are questions I need to ask the neurologist at her next appointment.

Progress too on moving into the community - yesterday we met with someone from a specialist housing association for people with disabilities and mental health problems and a potential care provider. We were very impressed with each of their approaches and the obvious passion they showed for supporting vulnerable adults to live as full a life as possible. With the aid of grants, the not-for-profit housing association would purchase a share in a property of our choice, given various conditions are met. The other part of the property would be mortgaged with a specialist mortgage company. As I said in my previous blog post, the budget covers a house we've seen in the local area.

The tendering process for providing the care package is now well underway. The plan is for decisions to be made early in September. The more I learn about supported living the more I realise it will be very different to any other service that Chrissy's lived in. It will be a huge challenge and a steep learning curve. Chrissy has no idea of what's in store as she wouldn't understand the concept - but I'm really excited! Bring it on....:)

I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN (syndromes without a name) blogger

Being Chrissy's mum

A beautiful day...

But behind the scenes, I'm struggling with feelings of sadness and loss. We were so thrilled to get Chrissy back at the end of last year - to see the return of her zest for life and her enthusiasm for doing jigsaw puzzles, to take her on holiday, out with family, and shopping for new shoes, her grandma's reaction when we took her up north to visit her for the first time in years.....

Now, Chrissy's slipped away from us again and I'm gripped by the green-eyed monster whenever I see or hear about other adults with learning disabilities going out with their parents. It's routine for many such families but for us, outings and holidays with Chrissy are rare and precious events, often fraught with drama, to be celebrated when they go well. Chrissy just can't manage them at the moment and I realise that we're running out of treatment options. Her epilepsy no longer responds to monotherapy and nearly every secondary antiepileptic drug out there has been tried. She is so acutely sensitive to the neurological mayhem these drugs can cause that they stop her living her life. She isn't complying with bathing, teeth-cleaning etc and is still refusing food. Mood swings continue to be marked - one minute smiling and calm, the next screaming and shouting. She is disrobing on the unit but we haven't seen this at home - just shoes and socks off. She has bruises all over her body again from self-injurious behaviour - the only way she can express her distress. Two weeks ago I'd noticed bruising on her neck & had to raise my concerns at a higher level. I've never seen bruising there before & we're now awaiting the outcome of further investigations into how & when it happened. The explanation I got was too vague for comfort.

The weekend before last when that picture was taken Chrissy was so excited to see her brother, Jamie. His girlfriend, Penny, looks a bit like her sister, Alex. Chrissy thought she WAS Alex - & not just fleetingly. When Alex herself turned up later, Jamie and Penny had left. Chrissy transferred the name seamlessly to the real Alex. I'm uneasy about her confusion. She's always known who close family are even if she forgets other people's names. Another point to mention to her neurologist on Thursday when her antiepileptics are reviewed. The deterioration in Chrissy's health & mental state is something that he will be trying to resolve. The unit has no epilepsy specialists - the neurologist is based at a local NHS hospital. There's nothing more the unit can do for her now and, given the current situation, it's detrimental for her to stay there. So why is she still there?

Some of the housing barriers we've faced have shifted but new ones have popped up. We made a successful bid on a council house in the village but, although we were never given the chance to view it inside, we went with the professionals' views that it was unsuitable due to a number of safety issues in relation to where it was situated and the internal layout. The more housing options we consider the clearer we are about non-negotiables but it's hard to keep having your hopes raised only to have them dashed again. There are very few houses that become available in this area but Chrissy still has priority banding so I will keep checking the social housing website. The other option that's starting to look promising is shared ownership. A specialist housing association has finally come on board and we're having discussions about a house for sale nearby that meets their budgetary requirements. They are concerned about the noise impact on neighbours from any house with a party wall, even with sound-proofing, but a detached property is out of the question due to cost. The noise/disruption to neighbours issue must be a common theme with most people being moved out of assessment and treatment units into supported living and the Winterbourne View Joint Improvement Programme needs to address this.

The tendering process for providing the care package is also moving painfully slowly. I know we'll get there eventually but Chrissy has now spent 3 1/2 years in a locked ward. "What must it be like for her?" I asked Ian recently in a tearful moment. "We'll never know," he said. "You try to put yourself in her shoes but you can't see it like she does and there's no point even speculating."

He's right of course and I need to get a grip - but what mum wouldn't feel like I do? My heart is always at war with my head. I long to kidnap Chrissy and bring her home but I know the situation would be unmanageable, and certainly not in her best interests.

Last week Alex asked: "Do you ever resent Chrissy?"

"No," I answered as honestly as I could. "None of this is her fault. It's the situation I resent."

Reflecting on this question today I can recall times when I've felt fiercely resentful, but only in passing, the same way that I resent Ian when he keeps does something infuriating no matter how many times I ask him not to - like dumping his work briefcase on the kitchen floor!

Alex has just started work as a tutor at a unique school for children with autism, using ABA (Applied Behaviour Analysis) http://www.ambitiousaboutautism.org.uk/page/treehouse_school/teachingandlearning/aba.cfm She's very excited about this new opportunity. She has always felt helpless in the face of Chrissy's suffering, even as a small child. Now she feels able to channel her conflicting emotions, and to use her valuable family experiences and training as a psychologist and teacher to improve the lives of other young people who struggle with autism and learning disabilities. Perhaps we can, in consultation with Chrissy's support team, try some ABA strategies once she moves into supported living.

Naively perhaps, I'd once hoped that similar autism-specific approaches would be used in assessment & treatment units & residential homes that claim to specialise in autism. Maybe one day.....



I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN (syndromes without a name) blogger

Community Care Magazine: The Postcode Lottery of Care

Following on from my last post with a link to my article in Community Care Magazine, here's one I prepared earlier!

This piece ran 13 years ago when Chrissy was 16, & it's about inconsistency of service levels offered by local authorities.

We had just moved to Buckinghamshire, & the support hours that Chrissy had received in Hertfordshire, where we'd lived previously, were cut in half. Chrissy's needs hadn't changed but the council claimed they 'didn't have a big enough purse.'

http://www.communitycare.co.uk/articles/21/12/2000/29262/losing-out-in-the-postcode-lottery.htm



I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN (syndromes without a name) blogger

Community Care Magazine: The Endless Search for Suitable Housing for My Daughter with Learning Disablities

Community Care, the online magazine for social workers & care professionals, got in touch to ask me to write a piece for them based on my post about barriers to moving Chrissy into appropriate housing in the community. Here's the link. Hope you like it!

http://www.communitycare.co.uk/articles/05/07/2013/119308/the-endless-search-for-suitable-housing-for-my-daughter-with-learning-disabilities.htm




I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN (syndromes without a name) blogger

Continuing Healthcare Disputes

Despite the parties involved in this messy CHC dispute engaging lawyers, & us letting Norman Lamb MP & MENCAP know about it, there's been no end in sight. Now we're seeing some movement but we're not holding our breaths....

On the NHS website it suggests that disputes are escalated to PALS or an independent advocacy service. We tried those routes but it kept bouncing back to local resolution. In our experience 'local resolution' is a place where promises are made to get the strategic health authority, who, until recent NHS reorganisations, were responsible for local NHS trusts at regional level, to call off their dogs. Promises made at our local resolution meeting in 2011 got broken then we were simply stonewalled.

No doubt many people fighting for CHC funding, or their relatives, give up because they lose the will to live but the red tape & barriers we've come up against make us even more determined to press on. It's hard to understand why there isn't a better escalation route, say someone working at local level with the local authority & NHS to resolve time-consuming continuing care disputes that drain the public purse?

English Social Services Complaint Procedure also applies to complaints about health trusts. It mentions unreasonable delays in dealing with a complaint & states that a delay of 3 months or more in the investigation of a complaint could be considered unreasonable. The delays that we have experienced far exceed these limits but, at last, the retrospective review to examine the NHS trust's past decision over Chrissy's eligibility for CHC funding was held in June. The decision-makers are reconvening next Monday as there's so much evidence to look through. We should then have their decision in the next few weeks.

We have ample evidence to show that the CHC dispute prolonged Chrissy's distress and suffering prior to her admission for inpatient treatment and assessment, and we're in the process of getting an independent review on this.

It's difficult to say how much the dispute is affecting Chrissy now but there's no doubt that it's still having an impact on her housing options. The CCG states that if it turns out not to be the responsible commissioner once the dispute is settled, it is potentially open to a challenge that it has fettered the relevant responsible commissioner’s discretion by agreeing to a placement and a package of care outside that body’s policies and/or resources...

How extraordinary that public funding works in this way - and why the hell doesn't the CCG settle the dispute? It's been nearly 5 years and they still haven't started the new CHC review. Despite stating in the past that the retro & new reviews are two separate processes & one wouldn't affect the other, they have now u-turned & said they need to complete the retro first.

The CCG got a stay of execution when Chrissy's health took another downturn. Now we're all in limbo because she is still off her food, and her epilepsy meds are still being optimised.

Since Chrissy's bid for local social housing was trumped by someone with a more local connection, the likelihood of her getting suitable social housing is looking increasingly slim. Other rules that apply only in rural communities look set to scupper her chances. I was told today that if someone with the same local connection as Chrissy has been an active applicant for longer than her, they could outbid her despite her priority banding. This frustrates me immensely because we asked about social housing years ago when it was obvious that living in a residential home setting wouldn't meet her complex needs. We were told it was too expensive.

Commissioners continue to press us to compromise on the location but I still can't see how supported living will work if she is not close to us for the reasons I've explained in my previous post http://jgregorysharingsstories.blogspot.co.uk/2013/02/barriers-to-successful-care-in-community.html

None of us have managed to come up with any alternative supportive environments that would allow Chrissy to have her own space - such as a self-contained unit on a campus or an annexe attached to a communal home - that could work without the need for her to live so close to family support.

The multi-disciplinary team are meeting again next week for further discharge planning. Are the delays in finding suitable housing detrimental to Chrissy - or do the benefits of staying where she is while meds are still being changed outweigh the disadvantages of being stuck in an institutionalised environment?


I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN (syndromes without a name) blogger

'The Difficulty of the Challenge ahead should not deter us from having High Aspirations.'

At nanny's up north
Last week you may remember I blogged about a bungalow that had come up on the social housing register in a neighbouring village. It looked very likely that Chrissy would be successful so her MDT team and I swung into action. Last Thursday 14 of us sat round a table to thrash out details of the support package Chrissy will need in the community. I felt immensely reassured when it was agreed that there would be a bed for Chrissy at the assessment & treatment unit should a crisis occur during the transition stage that meant she needed to return there. Also, it was agreed that if her condition were to become unstable again in future there would be no delays in admitting her for inpatient treatment & assessment again, as there were before.

We even discussed finer details about the need for flooring to be the same throughout to enable Chrissy to move around as independently as possible. She trips on threshold strips between rooms and finds changes in the appearance of different surfaces disorientating. As ideas about suitable robust furnishings etc were bounced around and the issue regarding platelet count and Chrissy's meds sensitivities were discussed her psychiatrist said to me 'you know her so well.' Ridiculously I felt tears well up. It has taken me nearly 30 years to get to this point - for an MDT to see what I see and to fully understand the complexity of her needs. Often the term 'complex needs' is bandied about without the true nature of those needs really being identified and addressed. Due to the fluctuating nature of Chrissy’s symptoms and behaviours, previous assessments have provided mere snapshots of the whole picture but now she has spent so much time as an inpatient, there is ample documentation to inform better treatment and a more holistic view of her needs for the future.

After the meeting I felt an overwhelming sense of relief that finally Chrissy will get what she needs to lead the happiest and fullest life possible.

Then, today I had some bad news - another more local applicant has got the bungalow in the neighbouring village. Local connection trumps priority banding, which could well rule out anywhere local unless it's on our doorstep. Each English housing authority must have an "allocation scheme" for determining priorities. We were told that, in this case, S106 Planning Obligation applies in that applicants must have strong local connections to local parishes. Unfortunately for us, the first priority is to applicants who live in the parish where the accommodation is rather than neighbouring parishes.

I was upset that we hadn’t been informed and I’d had to find out by chasing it up, and told the allocation officer so. She said they didn’t ‘have’ to tell applicants if they had been unsuccessful and spouted the S106 Planning Obligations at me. I kept telling her that I understood the rationale behind the local connection criteria but she chose to miss the point and kept repeating the S106 regulations. In the end I asked her if she was robot…... So frustrating! She knew the that there was multi-agency working involved, who needed to know the outcome of Chrissy’s bid as soon as possible so they could plan her support. Other members of last week's MDT were as gobsmacked as I was, We had all been on tenterhooks ready to act on the outcome of our bid. The allocation officer's approach was not in the interests of joint-working, and I'm told that someone will be raising the issue with her Housing Manager.

Despite the setback, our aim is to have Chrissy settled into supported living by October. She's eating better and we are awaiting results of blood tests but her moods are still very volatile and unpredictable. At the weekend we took her up north to see her nanny. The plan was to go out for a meal on Saturday night for an early Father’s Day celebration. As we’d enjoyed an uneventful pub lunch together last Thursday I was hopeful that it will all turn out fine. The journey to Chrissy's nanny's was OK but Chrissy kicked off after we got there then it all escalated on the Saturday. She had lovely moments, as Chrissy often does but her moods switched so suddenly our nerves were in shreds. She stripped off a couple of times – behaviours we hadn’t seen in a while - so we decided not to risk the meal out. I stayed home with Chrissy while Ian, Alex and Ian’s mum went out.

The next day, Chrissy kept getting ‘stuck’ with transitions. We thought we’d get stranded there but we did eventually get her into the car around tea-time, and the drive home was relatively peaceful.

Discussing the visit with her little sister; Alex, was thought-provoking. Alex said I was ‘deluded’ because I keep trying to take Chrissy out with us when it nearly always ends badly. I don’t think it nearly always ends badly but I can understand her perception that it does! I do try to assess the risks before I take her anywhere but she’s so unpredictable at times….. I tried to explain to Alex that if I stopped trying to take Chrissy out I would be giving up on her, and when it does work, we rejoice! This comment by Chrissy’s positive behavioural support team from 2009 sums up the approach that I believe in:

‘Clearly, Chrissy has a well-established history of being the person that she is, and experiencing the world as she has. The goal for her to become a more active and engaged person, whose daily routines are rich and varied, may not be easily achieved. Nonetheless, the difficulty of the challenge ahead should not deter us from having high aspirations.’

I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN (syndromes without a name) blogger

Living with a Rare Chromosome Disorder (2)

Just as I was brimming over with joy about Chrissy getting her life back, it all went belly-up again- but every cloud has a silver lining. Reading through Chrissy’s records and seeing everything that’s happened over the past six years was harrowing but now I'm clearer about what she needs for a better future. Her recent setback is a stark reminder of her fragile hold on stability and the importance of having robust community-based medical support.

Chrissy’s behaviour started to worsen after her antiepileptic, Zonisamide, was in the final stage of being titrated up to 300mg a day. Her moods became very erratic and she turned into a roaring Stalinesque dictator. Then she kept going back to bed and lost her appetite completely. As Chrissy is obsessed with food and eats everything that’s put in front of her, (the opposite of her failure-to-thrive infancy) alarm bells rang.

These symptoms had appeared nine years ago when she was 20 - her platelet count had dropped so low she was rushed to hospital. So this time, I asked for blood tests to be done asap. Lo and behold, her platelets were low again. Platelets help the blood to clot so if the count drops too low it can lead to uncontrolled bleeding. There have been other abnormalities in Chrissy’s blood count over the years, nothing too striking, but at one point her doctors thought she had myelodysplasia, or pre-leukaemia.

So here we go again. This time, her platelet count isn’t low enough to put her at risk but it’s been part of a general downward trend. As any parent knows, there’s nothing worse than seeing your child suffer but knowing you’re helpless to do anything about it. Last weekend Chrissy kept telling me - ‘I feel sick.’ Sometimes she tried to eat but couldn’t bring herself to swallow; other times she refused food and fluids altogether. She has lost 7.5 kg (over a stone) in the past fortnight and constantly has white gunk around her mouth due to dehydration. Her doctors have been on the case but it’s trial and error. Chrissy’s neurologist advised a reduction in Epilim - not the new drug, Zonisamide. I agree with his decision. So many new adjunctive antiepileptics had been tried, and caused horrible side-effects, we were at the end of the road. We can’t keep putting Chrissy through what are effectively drug trials. She’s been on Epilim for years so it’s a case of better the devil we know, but the dose has been high, and, perhaps when Zonisamide was added it tipped her over the edge. We saw Chrissy’s neuro on Friday and he said that Chrissy had been trialled on just about every antiepileptic drug going, so he was reluctant to try any more. He decided to withdrew Clobazam, as that could be making Chrissy nauseous, and should have only been a stop-gap drug while Zonisamide was being titrated up anyway. If Chrissy responds well he will look at tweaking her other anti-epileptic drugs down to try and achieve a better seizure control/quality of life balance.

The sudden deterioration in Chrissy's health has been a rude awakening. I’d been living in hope that one day she would regain the lasting stability she enjoyed during her teens. Now I have to admit it’s unlikely. It was hard enough to stabilise her epilepsy and behaviour but now these other side-effects have to be taken into consideration too.

So until a few days ago, I was going through a period of grief again - bursting into tears at unexpected times, and waking up in the night panicking, and torturing myself with thoughts like ‘how can her body cope with all those drugs going into an empty stomach?’ Then the sun came out, and love and support came pouring in from all sides, and the future started to look rosier again....

In the meantime, a bungalow has come up on the social housing register. It looks promising – in a neighbouring village set in open countryside, five minutes drive from us - and Chrissy would share our GP, who already knows about her. Her Social Worker is 'quietly confident.' We should know by Monday if our bid's been successful.

Supported living still feels like an experiment to me but I'm told it can work for even the most complex and challenging individuals. If it's going to work for Chrissy, it stands a better chance if she's close to her family.

Wish us luck!



I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN (syndromes without a name) blogger

Frontline Care and Funding Wars

Earlier this year, in our search to uncover the truth behind the ongoing funding dispute over Chrissy's care, I made an official subject access request to view her records.

Two weeks ago we received three big boxes full of paperwork. For several days, each time I walked past them, I eyed them nervously, knowing that once I ripped the first box open I wouldn't be able to rest until I'd gone through the lot...

A week ago on Friday, when I pulled out the first jumble of papers, I was lost. I crouched over them for so long my whole body seized up. When I glanced up at the clock five hours later it was midday and I was still in my dressing gown. I pressed on. A fractured ankle in 2007 from banging her heels on a hard surface; a safeguarding alert where she'd wrongly been given Lorazepam by a trained nurse 'just in case;' an optician receipt - Chrissy had broken her carer's glasses by hitting her in the face. There were many similar incidents recorded from 2007 onwards. I spent the next four days reading the records, scanning in the ones that were relevant to our legal challenge and crying my eyes out.

I'd been made aware of all major safeguarding issues but I was stunned by the level of aggression that Chrissy had displayed towards carers and women she'd lived with. Maybe it had been underplayed so as not to upset me? We get the occasional smack at home but we can normally tell when it's coming and keep a safe distance. If we do get in the firing line the smacks rarely hurt as they lack power or aim. The point is - why had Chrissy (who has the intellectual functioning of a two-year old) been put in a position where she could keep doing this to herself and other people, and what did these behaviours say about her level of distress?

The documentation reveals that Chrissy's carers had struggled to get help from Chrissy's GP and psychiatrist and how they had been left to cope alone with insufficient support. I could see the impossible situation that they'd been put in, the high risk that Chrissy's challenging behaviour posed to herself and others, and why they had been forced to evict her. I read on to a report that described how some of Chrissy's carers were frightened of her and found her so exhausting that they couldn't work consecutive shifts with her. It was even implied in a carefully worded way that some carers had left because of Chrissy.

There's no doubt that Chrissy can be extremely challenging but she can be a delight too and has had a positive impact on many people's lives. It's clear that several of her long-term carers have become attached to her and been profoundly affected by meeting her. Over the years they've commiserated with me over how difficult her life can be but have also told me about happy times they've shared.

Last week, I had a chat with a lady who used to work with Chrissy before she went into hospital. She said: 'Chrissy’s such an amazing person and will always have a place in my heart… It was by working with Chrissy that I knew I had chosen the right career.....so challenging at times but so much more rewarding and satisfying by achieving the smallest of tasks. Please give her a hug from me…'

Later that day a nurse on Chrissy's ward described her in similarly warm terms. 'She's had us all in stitches with her hilarious comments....' she recalled. 'She's got such a fantastic sense of humour!'

One thing's for sure, no one forgets Chrissy once they've met her! Her challenging behaviours can be relentless and very distressing to witness but it crucified me to see her described as someone to be feared.

On the positive side - we got what we wanted from the records. We've uncovered extremely damning evidence that shows what was going on behind the scenes of the funding dispute. We knew that the PCT's 'if Chrissy was in a different 'autism-friendly' environment these behaviours would not occur' argument had failed because it could not be supported legally. Their second argument was even weaker. They acknowledged that Chrissy had had a recognised healthcare need before moving into the area BUT they refused to fund it on the basis that it was a pre-existing need. They were then told BY THEIR OWN SOLICITOR that this did not accord with NHS guidance so instead of coming clean and accepting responsibility, they came up with further ploys to dodge funding responsibility, including trying to pass the buck to two other PCTs. With the pre-existing healthcare needs argument they'd shot themselves in the foot by stating that Chrissy had healthcare needs before she moved into the area. In that case, shouldn't she have been eligible for continuing healthcare funding way before the local authority first applied for it in 2008?

The information we found explains a bizarre reason that Chrissy's psychiatrist gave for refusing to come out when a care home manager phoned her for help - because 'these behaviours aren't new.' Since their arguments to deny CHC funding failed legally the PCT have tried every other trick in the book to stall things. We don't see how they can wriggle out of this now and want an independent review. We will not rest until those responsible are named and shamed. We're appalled by what we've uncovered and how many people, including trained medical professionals, were party to this scandal. We acknowledge that Chrissy is extremely complex and needs high cost support but that's no excuse. We will never forget how funding issues exacerbated her suffering over a prolonged period. If we hadn't fought every inch of the way, God knows how this would have ended.

None of us should forget the wider implications of Chrissy's case - there must be other vulnerable adults, who don't have anyone to fight for them, suffering at the hands of unscrupulous NHS trusts.....


I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN (syndromes without a name) blogger

Legal Challenges and our Hopes for a Better Future

It's been a tough week and at times I've felt overwhelmed. We've been dealing with solicitors over difficulties with the plans to move Chrissy on, and have seen a return of some of her old challenging behaviours. Issues with the quality of personal care she'd been receiving had resurfaced but, thankfully, they've been resolved again.

We've had crisis times like this throughout Chrissy's life. I'm painfully aware that some quality of personal care problems could be avoided if Chrissy lived with us full-time but, as we experienced this weekend, it could never work for a number of reasons. I discuss this dilemma in a previous blog http://jgregorysharingsstories.blogspot.co.uk/2012/10/living-at-home-again-impossible-dream.html Some adults with a learning disability can thrive in the home setting. Chrissy isn't one of them and this is the case with many adults with a learning disability that display severe challenging behaviours. Even when Chrissy is at her most settled, she is full-on and can't be left unsupervised. Her intellectual functioning is at a similar level to a two-year old's - imagine the difficulties that a stroppy adult-sized toddler would present - and then some! When Chrissy's unsettled, as she was this weekend, her moods are balanced on a knife edge and it's like living in a war zone. As part of our legal challenge, I've been reading through old care records and they're a brutal reminder of what day-to-day life can be like with Chrissy. These behaviours have proved impossible to manage even in residential settings geared up for such challenges.

We hope that the reversion to old behaviours is temporary. As Chrissy's Zonisamide has been gradually upped, she's had spells of wetting herself at night and sleeping excessively - but then those side-effects have worn off in time for the next dose increase. Now it's been increased to its optimum therapeutic level, which seems to have tipped her over the edge. On the unit last week she'd had nosebleeds and kept wanting to go back to bed during the day. When she came home on Friday, she seemed fine at first then her mood kept switching from tears to manic laughter to shouting and demanding things. She took to the floor several times, biting her toes and pulling her hair. She demanded the same things over and over, like a stuck record, but whatever we gave her wasn't enough. She was generally more irritable and destructive, and broke her laptop mouse when she threw her laptop across the room. Ian's bloody brilliant when she gets like this; he's so patient with her, much more so than me. I find these rage episodes and prolonged periods of distress completely draining and they throw up painful feelings - resentment, guilt, pity, anger, grief, fear, helplessness, inadequacy....

Chrissy complained several times that she felt sick and, because she kept getting 'stuck' in one place and couldn't move on, yesterday, she couldn't even settle down to eat. Everything from persuading her to take her medication to getting her into the bath took far longer than usual. Then, when we finally managed to get her into the car and back to the unit at around 5.30pm, she wouldn't move out of the car. These aren't quite the same as her frozen states because she isn't content to sit quietly in her own space. It was upsetting to see her so distressed again but she is still alert and has all her wits about her. In fact, at one point, so determined was she to stay put, that she locked herself in the car. We had keys of course but there's no moving Chrissy when she doesn't want to be moved! We got stuck at the unit for ages, and had to laugh as we swapped places with Chrissy. We thought that if we hid out of sight behind the entrance gates she'd get bored and call us to be let out. Not a bit of it! Eventually her care-worker had a brainwave - to move the car slightly closer just to jolt Chrissy out of her fixed position. It worked but she took to the ground outside and still refused to move. At least we got our car back!

So on to the legal challenge - I've posted previously about the Ordinary Residence and Continuing Healthcare funding dispute, which kicked off after we relocated to a new county when Chrissy moved into Adult Services at 19. The timing of our move and the fact that Chrissy's condition worsened afterwards turned her into a political hot potato. The upshot is that we've had to engage solicitors yet again because the funding dispute is still adversely impacting on her life. As my husband, Ian, puts it: 'If we hadn't kept driving things on, Chrissy would have been condemned to a wretched life.' As the funding dispute started in 2008, it's hard to understand why an independent higher authority haven't been brought in to resolve it by now. It looks like this nearly happened in 2011 but the commissioners intervened by agreeing to a process called 'local resolution.'

A local resolution meeting was held in November 2011 and they promised to put things right. They offered to carry out a retrospective continuing healthcare assessment, which would be a major step towards solving the funding dispute and determining who was responsible for funding Chrissy's care package. They promised to complete it by February 2012. We're still waiting. Now they say Chrissy can stay in hospital until they've completed the assessment and funding responsibility is determined - yet they still haven't specified a definite date......

We are also concerned that if they claim that someone else has funding responsibility, the other official body will appeal, which will then lead to further delays. So we've been forced to bring matters to a head and have engaged solicitors. Last week the commissioners replied to their letter before action. I've spent the past few days correcting facts and omissions in their reply, and adding further evidence to strengthen our case, ready for the solicitors to prepare for the next step. Is what they're doing actually unlawful or just poor practice?

Chrissy's case is further strengthened by a wonderful letter from Mencap. Quotes include: 'It has been extremely difficult for Mencap to understand why the situation has remained stuck for so long.....'The amount of correspondence that Chrissy’s family have had to engage in to try and understand the barriers, and to try to move things forward for their daughter is difficult to believe.....''There has still been no proper assessment of Chrissy’s needs on which to base the planning......' 'The Government is very clear that people with a learning disability should be supported to live in their own communities. There is no reason why Chrissy should not be living in her own home near her family. It is crucial that the accommodation meets her needs and that she gets support from staff who are able to meet her complex health and behaviour needs. It is also crucial that she can get the right input from medical professionals, when needed.....' 'Chrissy should have the same opportunity to enjoy life as other young women her age, with the right support. She should not be living in a unit....' 'I am sure you will agree that it is unacceptable for the situation to continue as it is. I think we can all imagine how damaging and stressful it is for Chrissy and her family.'

Let's hope that we're nearing the end of this damaging chapter in our lives and that the outcome will enable Chrissy to live her life in the way that she'd want to. http://jgregorysharingsstories.blogspot.co.uk/2011/08/how-id-like-my-life-to-be-by-chrissy.html



I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN (syndromes without a name) blogger

Living with a Rare Chromosome Disorder

Well....Chrissy's clinicians have deemed her ready for discharge now, just as I was beginning to wonder whether I was kidding myself to think that her behaviour and epilepsy would ever be stable again.

Since the last meds change several weeks ago, every day has been a sunshine day. We're almost at the optimum therapeutic dose of Zonisamide, at which point the stop-gap antiepileptic, Clobazam, will gradually be withdrawn.

It's heartwarming to see 'no seizures' and 'no challenging behaviours' recorded each day in Chrissy's ward/home report. The episodes of inconsolable distress have vanished. Music from her Ipad makes her dance in her chair and her cheeky chuckles ring out around the house. I took the photo above when we were sitting in my car and she had just reached across to stroke my arm lovingly. Simple gestures like that mean the world to me as Chrissy doesn't often instigate affection.

She is having a great time exploring the new ipad she got for her 29th birthday, doing puzzles, building snowmen and causing mayhem in her virtual home. At first she used different fingers and even changed hands to manipulate objects around the screen - but she's learning fast. She has relatively good manual dexterity and loves anything to do with computers.

On our morning walk to the village shop, Chrissy pointed out sights that interested her, including a metal arch over someone’s gate. 'Rainbow!' she cooed, then stood admiring it for a while. I was enchanted.

Chrissy admiring the 'rainbow'
Chrissy still struggles with transitions and needs all our attention but she's content and responsive, which makes our job much more rewarding. She wants to be out there living her life now. The unit do their best, and do take her out, but not as often as she would like. This morning when I asked her to take her medication, she replied: 'When the night staff come!' It's definitely time for her to move on but we've had to involve solicitors to focus commissioners' minds as things were dragging on. This has been the case with each of Chrissy's major transitions over the past few years. Legal aid cuts are brutal but, in this instance, Chrissy's solicitors were able to demonstrate that we had exhausted every other avenue and only turned to them as a last resort. She will, however, have to pay a contribution.

Chrissy's housing options are still unclear but we are finding a way through the maze. One of the biggest barriers we faced was accessing social housing. I was advised to bid on local homes by Chrissy's commissioners but after several bizarre 'admin errors,' a housing officer said that Chrissy wasn't 'well-placed' for general purpose social housing as she was 'unlikely to be thrown out onto the street.' If someone without a learning disability is at the point of discharge from hospital they would be moved to a priority banding..... The very few adapted properties that I've seen on the website are for the elderly only and, although Chrissy moves slowly and cautiously, she doesn't need adaptations for limited mobility. I then learned that there was a supported living panel at our local CC, which we had not been told about. Our local council's policy documents state that social housing for vulnerable adults and those with a learning disability are their priority. This hasn't been our experience and we've put in a Freedom of Information request to identify how many people with a learning disability have been offered social housing in the CC's area over the past year.

We've also made a mortgage application on Chrissy's behalf, which would be paid for from her benefits, and we're still exploring shared ownership schemes through registered social landlords. I had been left to deal with all this confusing information but now I've had enough and forward emails to the commissioners to deal with.

Chrissy finally has a social worker! Perhaps the long-awaited community care assessment will be done now. She must surely benefit from Social Services and NHS commissioners working together but why has it taken so long when the planning process has already taken place?

So, I'm still fighting to get Chrissy an appropriate care and housing package in the community, but the sting has gone out of it because she is so settled and content. This stability was only achieved by her spending time in an assessment and treatment unit and, in our view, the Government's knee-jerk reaction after Winterbourne to close down such units is misguided and dangerous. There's no doubt that big changes needed to be made, not least for assessment and treatment units to live up to their name - to assess and treat their patients - but we have much to thank Chrissy's unit for. They've brought her back to us.

I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN blogger

A Special Celebration & Undiagnosed Children's Day

When Chrissy arrived during the hottest April for 100 years, I was the proudest mum in the world. I was 23 and a first-time mum. It felt like my greatest achievement ever.

My baby looked flawless and her beautiful dark eyes seemed to take in every detail of her surroundings. In her little perspex cot on the maternity ward she waved her hands around so energetically that I called her our 'air traffic controller.'

Then the dark shadows started pressing in. Thank God we can't see what lies ahead of us.....

Like many children with undiagnosed genetic conditions, Chrissy was a failure to thrive baby. She struggled to feed and gain weight, and was floppy and sleepy - but she was a mass of contradictions. Mostly she was sunny-natured, alert and content to coo and watch the world go by but, even in infancy, she had prolonged spells of inconsolable screaming, and no one knew why. The rest is history and detailed in my book: 'Bringing Up a Challenging Child.... http://www.jkp.com/catalogue/book/9781853028748

Although we now know the cause of Chrissy's problems, she still remains quite an enigma to us and to her clinicians, despite spending three years in an assessment and treatment unit. We know her chromosome disorder causes hugely variable effects but her learning disabilities are significantly worse than most people affected by 1q21.1 microdeletion, even those with a larger area of deleted genes.

So where are we 29 years on?

We have another CPA (care plan approach meeting) coming up on Monday that we never expected to have. Chrissy has now been in the unit for over three years and is ready for discharge but despite my monumental efforts to find solutions and move things forward, she is still stuck there. The Government is very clear that people with a learning disability should be supported to live in their own communities so it is difficult to understand why there are so many barriers in place. I feel like I'm stuck too. It has been left to me to drive it all, and I now spend most of my time on this. It's the same with every major transition, eg when she went into the unit I was driven to the brink of despair along with her. Not only was I in pieces over her suffering but I fought epic battles to get her into hospital. Why does it have to be like this?

Mencap are very interested in Chrissy, and are finding it hard to understand why the situation has dragged on for so long. They are incredulous about the amount of correspondence that I've had to engage in to try and understand the barriers, and to try to move things forward for Chrissy. Her case has been brought to the attention of Chris Bull MP, who is leading the Joint Improvement Programme to move people out of assessment and treatment units after Winterbourne, and Norman Lamb MP, Minister for Care, who has asked to be kept informed of progress relating to Chrissy's case.

Our experiences are echoed by this excellent article highlighting flaws in the Government's plans to move people with learning disabilities and challenging behaviour out of assessment & treatment units into community-based settings:
http://www.communitycare.co.uk/articles/10/04/2013/119078/dont-ignore-housing-in-response-to-winterbourne.htm

Chrissy's most recent (and hopefully last for now) medication change has been from the antiepileptic, Keppra, to Zonisamide. Because she had three seizures in a row after Keppra was withdrawn, Clobazam, a benzodiazepine derivative like Valium, was added to Zonisamide and Epilim. Clobazam will be withdrawn when Zonisamide is titrated up to the therapeutic dose. Chrissy is already on the maximum therapeutic dose of Epilim. I've discussed seizure control/quality of life and my fears about the effects of medication on Chrissy's mood, health and general well-being in previous posts. Clobazam's sedative effect is dragging Chrissy down. I can't wait for it to end as it breaks my heart to see another drug stealing away her personality, and sapping her energy and intellect. I have to remind myself how far she's come - she rarely has screaming outbursts now and, as the effects of her medication wear off during the day, Chrissy is her old self again. It's a delight to see her enjoying jigsaw puzzles again, a skill she excelled at as a child.



Now Chrissy is more aware, she says with increasing frequency: 'I don't want to go back to the hospital.' I have sleepless nights, guilt trips and anxiety attacks over how she must feel living in a locked ward for so long, her suffering and disorientation from the effects of different medications, what she's gone through over the years, what the future holds for her etc. Of course I can only imagine how I'd feel in her situation but, no matter how hard I try to banish those thoughts, they haunt me. It would be such a relief to see her settled again near her family where we can be more involved on a daily basis and help with her support. It's the least she deserves.

I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN blogger

What Price Integration?

Alone in a crowd - with Team GB (Genetic Blip)

Thirty years after the drive to move people with learning disabilities out of austere, Victorian long-stay hospitals back into the community, could they once again, be victims of Government ideology gone too far?

A definition of supported living is 'persons with disabilities living where and with whom they want, for as long as they want, with the ongoing support needed to sustain that choice.' Nearly every Government policy supports the principles behind it but, as I've blogged previously, recent spending cuts and policy changes are blocking us at every turn. http://jgregorysharingsstories.blogspot.co.uk/2013/02/barriers-to-successful-care-in-community.html

The first supported living option we were shown was a bungalow in a cluster of three. I liked the secluded setting but, as it was too far from Chrissy's family home, I asked if there was anything similar nearer us. I was told: "Oh no, this is a one off; it was converted into three bungalows from one residential home. Ordinarily, we would never put three homes for people with a learning disability together like this as it stigmatises them, and makes them stand out in their local community."

I get the theory behind integration but, in practice, does it always work within the bigger framework of a person's needs? If Chrissy could speak for herself, I believe she'd say that her community needs to be small and contained, with lots of structure and routine, around people she knows that cherish her and accept her as she is and treat her with dignity. Chrissy's moods and health are balanced on a knife-edge. By her very nature, she segregates herself. Sometimes she loves to socialise and at other times she truly is alone in a crowd. So what would living in the wider community offer her that a smaller more secluded community couldn't? The big unpredictable space teeming with faces, sights, sounds and multiple choices that we call 'The Community' is anathema for many people with severe autism.

Last week I spoke to a parent who'd achieved my dream of having her child in a supported living setting close to her home. Prior to this, her son's complex/challenging needs had led to residential placement breakdowns - as Chrissy's had. When he'd first moved into the same street as his family, she'd told me 'it's as good as it gets.' It became the ideal I strove for and I wanted to know how she'd achieved it, but after hearing what she had to say I'm thinking: 'should I be careful what I wish for?'

"Jane, our kids are too 'special' for supported living and would be safer, and have a better life on a campus-like set-up - similar to where Chrissy is now but more of a little community," she said. "Like a retirement village but for people with learning disabilities and complex needs. As their challenging behaviour can be very disruptive to others they share with, they could live in their own home in the village, and there would be communal areas with other things going on that they could access if they chose to. They would each have their own staff team but back-up would be on hand."

Of course the wider community would be accessible too but sometimes it's in our children's best interests to keep them within certain confines to ensure their safety and maintain their dignity. Unfortunately, these core and cluster housing models are few and far between. The small rural community-based setting that she was describing sounds similar to St Elizabeth's School, which one of the children in 'Born to Be Different' attended http://www.channel4.com/programmes/born-to-be-different Chrissy, who'd been a termly boarder from the age of 14, and had been so happy there. It was geared up to the needs of its complex little pupils, and even had its own medical team to monitor their epilepsy. Specialists from top hospitals, like Great Ormond Street, routinely visited St Elizabeth's to see patients. It meant we no longer had to put Chrissy through the ordeal of attending hospital appointments in London.

The parent I spoke to explained why a similar setting, albeit one with single core residences, would be better for her son than the community-based set-up he's in now.

"He doesn't see the community like we do," she said. "He has a thing about paper and, if he spots a sweet wrapper or something blowing in the road, he will chase it, oblivious to the danger posed by passing cars. As he's a grown man, it's impossible to stop him once his mind is set on something. He has destroyed countless washing machines in his home because he's obsessed with taking them apart, and he's chucked stuff over the fence into his neighbour's garden because he can't stand the noise from her small children."

As we'd had difficulties in the past with community-based medical support from a learning disability team I asked what her experiences had been.

"Someone in the team keeps going off on long-term sick leave, so there's no continuity of care in one key area and we've had a battle to get a good psychologist. Support workers have felt abandoned and isolated because they haven't been given adequate back-up."

So can supported living work for all people with learning disabilities, even those with the most complex/challenging needs?

The prevailing ethos is that, with the right 'person-centred, flexible, bespoke support package' in place, it can. And if such an alluring support package does become available for Chrissy during these times of austerity? Well, I guess we'll have to wait and see...

I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN blogger

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