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